Research reveals interstitial cystitis triggers and frustrations

The Interstitial Cystitis Association (ICA) estimates that as many as 8 million women and 4 million men in America live with interstitial cystitis, also known as bladder pain syndrome or IC/BPS. Various treatment pathways exist, but they are not guaranteed to work for all individuals that are living with the condition.

From the community:

“I get lower stomach pain when my bladder is filling up. Urgency as well. I can’t hold on otherwise it’s painful. Very bad stinging and burning when I urinate. I have these symptoms almost every day, but there will be periods of time where this is so much more pain. ” —Inspire member

About the Interstitial Cystitis Association Community on Inspire

Pain and other IC/BPS symptoms like frequent, urgent urination can greatly impact one’s ability to work, socialize, and enjoy life. More than 40,000 people with IC/BPS from around the globe are members of the ICA community on Inspire. They regularly share their personal experiences and look to others for advice and support on how to get an accurate diagnosis, find the right specialists, manage symptoms, and have a better quality of life.

To better understand the needs of this patient population, Inspire researchers, with guidance from ICA, conducted an analysis of organic conversations among members of this unique Inspire community using Inspire Patient Voice. Pharmaceutical health economics and outcomes research (HEOR) teams can leverage this information to create clinical, commercial, and medical strategies that more accurately reach and help people living with IC/BPS.

From the community:

“This disease is so much pain. I’m just glad to know that I am not crazy…It feels like the worst pain I’ve ever had in my life. Now that I’m getting both the bladder instillation and nerve block is giving me some sort of normalcy back from the beginning. I really hope that I am able to enlighten someone with my journey. This is a monstrous disease and whenever I can feel my flare coming on me, I just pray to God that he blesses me to be able to get my treatments done as soon as possible. I don’t know if anyone else knows about the nerve block, but I know that I couldn’t do anything initially because of the overwhelming pain…You cannot live with this magnitude of pain indefinitely.” —Inspire member

Inspire research reveals patient frustrations and concerns

Inspire senior research manager A. Leigh Garrett, PhD, and Inspire senior research analyst Erika Kline, PhD, conducted an Inspire Patient Voice analysis (also known as social listening) to learn more about the most common pain triggers among ICA community members on Inspire.

Inspire Patient Voice is offered as a standalone service or can be the first step in a broader Inspire PatientJourney+™ market research study. This process promotes a clearer understanding of a disease and its related treatment journey as seen through the lens of those directly affected by it.

The Inspire IC/BPS analysis involved scrutinizing more than 3,000 unique member posts culled from a two-year period. Embedded in the dialogue about flare triggers was mention of gaslighting from the medical community. These findings surprised even Dr. Garrett, who has IC/BPS. Here, the researchers share what they discovered.

People with IC/BPS struggle to have their condition taken seriously

Member posts revealed dismissive attitudes from the medical community for patients seeking help with pain flares, including identification of triggers. “Complex interactions with healthcare professionals (HCPs) unexpectedly emerged as a common lived experience among members seeking care for pain flares,” says Dr. Garrett.

Members reported discouraging reactions from the healthcare providers they looked to for help, including rudeness, apathy, dismissal of pain symptoms, and cold indifference. Understandably, these traumatic experiences influenced future communication and trust with healthcare professionals. These misunderstandings about their symptoms and condition meant many of those living with IC received lower quality or less effective care.

Inspire members offer their peers the following advice to clearly communicate with healthcare professionals:

Focus on your current set of symptoms. Only share details about past tests, appointments, or flares when requested.
Maintain and bring a journal of symptoms, including pain levels and possible triggers, to appointments.
Switch to another provider/specialist if you feel you are not listened to. Where possible, obtaining care from a urologist with a similar race/ethnicity and/or gender has also been advised.

“Member responses went into great detail about personal experiences, which shows that online health forums offer a safe space for people with chronic health conditions to find support in their peers,” says Dr. Garrett.

From the community:

“My level of frustration with the lack of knowledge of IC is growing. I see 4 different specialists and due to my pain I have been unable to go to work for a month. I am trying very hard to keep working full time, (I am a truck driver, car hauler to be exact), and I am struggling. The constant vibration of the truck and the physically demanding nature of my job is proving to be a little more than I can take. I have tried filing for short term disability through my job and it is hard. I think I just needed to vent but is anyone else dealing with sort of being dismissed as though you just have period cramps?!?!?!”” —Inspire member

Diet is the top trigger of bladder pain flares

Drs. Garrett and Kline initially undertook this research project to pinpoint pain flare triggers and comorbidities. After reading and analyzing the member-generated content, they identified 17 unique trigger categories like diet, sexual intercourse, menstruation, and autoimmune diseases and other comorbidities. “Diet was most frequently discussed in the online member conversations,” says Dr. Kline.

Healthcare professionals may recommend the IC diet as a mechanism for controlling pain; however, the complexity of implementing such a strategy may not be adequately relayed. “Even after providers recommended the IC diet, members said they still needed to customize the diet to what uniquely triggers their symptoms, which often takes time and patience,” says Dr. Kline. “There were a lot of helpful posts about foods that seemed to trigger symptoms among members.” The team also found that many members are very loyal to specific food brands, as well as restaurants that accommodate dietary requests.

People who have lived with IC/BPS for years often educated the newly diagnosed about the impact of certain triggers and offered helpful suggestions like taking the over-the-counter medication Prelief® to offset the effects of dietary triggers.

From the community:

“I can have a flare anywhere from 6 hours to 48 hours after eating something. If I knowingly eat something I shouldn’t, I take 1 tsp of baking soda stirred in 8 oz of water within 2 to 3 hours of eating. You can do this only once a day if your doctor clears it. It’s a lot of salt to process through your kidneys. To eat out at a restaurant I call the day before to get them to pull a chicken breast aside that is unmarinated and unseasoned. Sucks! I also take a couple of Prelief before eating out if I’m unsure of all the ingredients.” —Inspire member

Helping people with IC/BPS live better

This Inspire Patient Voice analysis was successful in identifying IC/BPS triggers, but it went beyond that to reveal unmet patient needs. Research will continue in 2023 with Inspire researchers examining environmental factors that may play a causal role in the development of IC/BPS like geographical locations, social determinants of health, and even mold and air quality.

“By listening to what people with IC/BPS are saying, we gain a greater understanding of how this disease impacts their lives, and how pharmaceutical companies, healthcare providers, and the medical community can help,” says Dr. Garrett.